Monday, January 6, 2014

I'm with her

For those who don't know us yet, this is my daughter, Kayli, and I. 


Kayli is 4.5 years old, and has Trisomy 18. In God's plan and timing, she has had 8 miracles of life, including; (1) Surviving T18 and the worthless "incompatible with life" medical label attached to it, (2) 32 minutes of anoxia (she passed away and came back to life), (3) 7 weeks of Endocarditis and Sepsis without antibiotics (it took us 7 weeks to convince physicians that our daughter deserve antibiotics to treat the infections), (4) a pinhole sized airway for 3 weeks (caused by a home care nursing accident, physicians refused to evaluate her because she has T18..eventually an ENT scoped her, found the anaphylaxis damage, and trached her), (5) a surgically perforated bowel, (6) a surgically misplaced gtube (surgeon caused a fistula, placed the gtube in her colon instead of her stomach...and left Kayli like that for 3 weeks, refusing to fix her mistake, nor explain herself), (7) a hospital induced medication overdose for the length of the hospital stay (10 times the amount of a heart medication), (8) a physician ordered Potassium overdose (after 1/2 hour of diarrhea to get rid of the Potassium, her level was still at 8.2...levels are critical if outside the 3.5-5 range). 

Despite all that has been thrown at her, she has gracefully forgiven all those who have harmed her, and taught her family to do the same. Kayli is an active member of our family, and contributor to our society. In her young life, she has established new policies and rights for special needs community members, given to others in need, and done almost everything on her bucket list (which is more than most adults can say!)! I've been told that when in public, she gets stared at. My love goggles tell me the stares are of admiration. You see, when some have mistakenly implied, she's with me, (which I understand because she is a minor)...my reality is that I'm with her. She is far more worthy of a follower than I am. We are Blessed to have Kayli in our minds, lives, hearts, and arms. When it is God's Will that she goes to heaven, I only hope that I can live up to being her Mom, even when I'm standing on my own, and no longer "with her". Not only is Kayli compatible with our lives, she has made my life compatible too! 

8 comments:

  1. I have given my heart and life back to the One who gave me life and it's been almost 21-months now since the Great I Am from freed from the bondage of alcohol addictions. I give God all the praise, honor and glory for His unconditional love for each and everyone of us! �� He is an Awesome God and I thank Him for using Kayli to show the saved and unsaved how much He loves us all! Praise His wonderful name for that! �� I'm sharing this powerful video on my Facebook page to show my family and friends 'How Great our God REALLY IS!', including my adult daughter who's being resistant and rebellious to the One who gave her life. But I'm NOT GOING TO GIVE UP WITHOUT A FIGHT against that lying, deceiving & destructive enemy that's warping her mind unknowingly! I love you all in Jesus precious name for sharing this powerful video which I keep viewing whenever time permits for I love Father God and give Him thanks for His healing that He did on Kayli! �������� I will forever give Him praise, honor and glory! Above all, my endless love to Father God, Son Jesus & the Holy Spirit! �� God truly blesses Kayli's family! �� All my love to Kayli and family! ��������

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  2. Holy maholes, you need to find a new hospital to go to ASAP! :o That is sue-worthy stuff that has been done to your daughter, I really hope you got those doctors fired at least because I know I wouldn't want them treating me! Besides that, I hope your daughter is doing well and recovering quickly, I can see from the youtube videos that she is a very fast learner :)

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  3. I saw a video with Kayli's story (how she came back to life after 32 minutes), and I'm literally in tears!! I respect all of you so much, and have no doubts that Kayli is the greatest gift from God. I'll check your blog because I'm totally in love with this precious girl! <3 I wish you all the best, you're such a perfect family! xoxo

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  4. Made me cry happy tears. GOD Love for her shows in her fighting spirit.

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  5. It really made me cry...b'coz i am so very happy for kayli...god is good really good...since the day that i've watch the video of kayli...that's the day i started to pray for her(kayli) to get well...don't worry baby god is always with you.

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  6. What an amazing little fighter! God bless you Kayli! Praying for you and your family!!

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  7. Thank you for sharing your miracle with the world. You are touching lives that you will never even hear about- I'm sure your faith will assure you this is so! I don't know how you find the time to put this together, let alone update it, but please don't stop! You're right- Kayli has a purpose put together by our God. I love her so much and she will be in my prayers, heart and mind for eternity...Blessings to her siblings, mommy & daddy too!

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